On Monday, we will be five months post-op. WOW. Amazing. I keep thinking back to a year ago when we were just starting to explore the idea of Ben having a rhizotomy and here we are now, already 5 months post-op. The surgery now is just a memory...
Ben is continuing to slowly improve. He is getting stronger and his endurance is vastly improved compared to when we arrived home in early March. Compared to before surgery, here are some changes that we've seen:
1. Endurance - Before surgery, Ben could hardly walk in his walker or with his canes for more than 5 minutes. His muscles were so tight that it was just too much effort to do more than that. His endurance had been much better but as his muscles got tighter and tighter, his endurance really suffered. In May, we went to Florida for a family vacation and I was thrilled with his walking endurance. He was able to walk the entire Orlando airport with no breaks or trips in the stroller. This is the first time he has been able to walk so far on his own. He still tires much more easily than other children his age as it is still a lot of work for him to move his body, but we are thrilled with how far this has come.
2. Standing - Before surgery, Ben could maybe stand independently for 2 to 3 seconds and this was not at all consistent. Lately, he's been able to stand on his own for up to 30 seconds pretty much any time.
3. Gait - His gait is a million times better than before surgery. As you have all seen, before he was high up on his toes and now his feet are flat. And he even gets his heels to hit first about 50% of the time.
4. Mobility - Before surgery, Ben mostly crawled or used his wheelchair. He was able to use a walker and quad canes but as the tightness got worse, his endurance with these decreased. Now, he hardly ever crawls. He uses his walker all the time in the house and out in public. We had a ramp installed in our garage and now he can get to the van independently, He still needs help to climb up in, but as he gets taller, he'll be able to get into the van all on his own. He is getting very good at using his quad canes but these are slow to use and they are really only used as therapy. We are now working on learning how to use forearm crutches! This is a huge deal. I envision that these will become his primary method of getting around. They aren't the perfect solution as they do result in more of a crouched gait than that quad canes or his walker, but they are much better on uneven surfaces and stairs. I do expect that it may take up to 6 months to learn to use the forearm crutches well but I'm hopeful that by next summer, he'll be really functional with them.
5. Steps - Now this is the question you are all dying to ask...is he walking on his own yet? Well. The simple answer is no. His standing and weight-shifting need to improve alot before he'll be ready to do any real independent walking, but that said, he is capable of taking a few steps on his own! And his confidence is growing...so hopefully we'll see some great improvements in this area in the next 6 months or so.
6. Strength - Most of his PT sessions with Connie (private PT) have concentrated on strengthening. Now that the spasticity is gone, it is now possible to strengthen his leg muscles that were so weak before. Another great way to work on strengthening (especially quads) is biking. And after much trial and error, we finally found a bike that works for Ben. It still needs a few adjustments (as it is a bit tippy) but so far, it is working out great.
Showing posts with label independent standing. Show all posts
Showing posts with label independent standing. Show all posts
Friday, June 22, 2012
Monday, March 5, 2012
Shriner's - Day 26 - a visitor and some great standing progress (cross-post)
Ben had a visitor this morning! Fletcher, a classmate from preschool, was in Montreal for March Break. Apparently, as soon as his parents told him that they were going to Montreal for vacation, he was like "That's where Ben is!". So, they were really nice to take time out from their family vacation to come and visit us.
When they arrived, Ben was in the playroom, but he quickly got back into his walker to show them all around the hospital. I couldn't believe how long and how quick he walked (with great steps). He showed them the family area, then we went downstairs to the clinic to show them the fish and the frogs and then all the way back upstairs to show them our room.
And now hugging it out! How cute are they!
The rest of the day was pretty exciting too. At his PT session in the morning, he walked quite a bit just holding on to one of Stephanie's hands:
And....
He stood independently for 25 seconds!! And maybe even took an independent step or two. Check the video out!
I would say that he has now "officially" passed his pre-surgery abilities. So now any progress we make is just so much fun becuase it's all new stuff!
The countown is on! Just 4 more sleeps!
Sunday, February 19, 2012
Shriner's - Day 15 - more awesomeness (cross-post)
As promised, here I am with more details on what Ben was up to on Day 15 here at Shriner's.
In the morning, he had an hour of OT (Occupational Therapy). Well. That is going SO MUCH BETTER than it was last week. Last week, he started crying before we even got in the room and REFUSED to go in until coerced. Now? He goes in happily and works hard for an hour (previously, sessions would only last about a half hour).
Here he is working on cutting, and doing a great job!
Probably the biggest deal here is that he can now sit ALOT better than he could 3 weeks ago. In the beginning, his truck control was poor and it was hard for him to sit up straight for even 10 minutes. Now he can do it for the whole hour (with a little reminding). Betty is sitting behind him, but really just to make him feel more secure. She really isn't supporting him at all.
And here he is joking with Betty!
At the end of the session, it was Whiteboard time. After missing a few sessions while Mom was here, I was thrilled to see him holding his marker so well AND writing his name HIMSELF!
At 11am, it was time for PT with Stephanie. Now that he's getting stronger, it's time to work on independent standing! How exciting! Before the operation, he had been working on it and could sometimes last up to 5 seconds before having to hold on to something. But it was so HARD when he was so high up on his toes and his knees were bent. Now, with flat feet and straight knees, he can make some real progress towards standing on his own!
Here he is standing with Stephanie behind him. She's been continually modifying a beanbag toss game as he's been progressing. In the beginning, he just had to sit on the bench and throw. Then he had to pull to stand using his canes and sit back down, before we would give him a beanbag to throw. Then he had to pull to stand with his canes, stand for a few seconds with his canes, and sit back down before we'd give him a beanbag. And now? He has to pull to stand and then LET GO and stand independently for a few seconds before we'll give him a beanbag.
You can see Stephanie's hands behind him here, and yes, sometimes she is supporting him, but there are times where he has stood on his own for up to 10 seconds! (See the video below for more standing success.)
We've also been working on knee-walking. Before the surgery, Ben could take up to 10 steps on his knees before falling forward onto his hands. Now, Stephanie has to support him, but we expect that this will improve quickly.
And I had to post this picture just because it's so cute!
Here's a video of him working on his standing for Daddy and Daniel:
At the end of each morning session of PT, Ben does his walking practice. At first it was with his walker and then he progressed very quickly to his canes. And this time? He was holding onto a skipping rope. His steps look amazing! His feet are nice and flat and most of the time he takes nice, big steps. And sometimes? His heels even hit the ground first!
Ben's pool sessions have been going great. He LOVES the pool and does everything that Stephanie asks him to do. In the pool, he works on standing with his feet flat and his knees straight. He also works on high kneeling (standing on his knees), pulling up to stand, squats, and even walking! And this week he took his first independent steps in the pool!!
In the morning, he had an hour of OT (Occupational Therapy). Well. That is going SO MUCH BETTER than it was last week. Last week, he started crying before we even got in the room and REFUSED to go in until coerced. Now? He goes in happily and works hard for an hour (previously, sessions would only last about a half hour).
Here he is working on cutting, and doing a great job!
Probably the biggest deal here is that he can now sit ALOT better than he could 3 weeks ago. In the beginning, his truck control was poor and it was hard for him to sit up straight for even 10 minutes. Now he can do it for the whole hour (with a little reminding). Betty is sitting behind him, but really just to make him feel more secure. She really isn't supporting him at all.
And here he is joking with Betty!
At the end of the session, it was Whiteboard time. After missing a few sessions while Mom was here, I was thrilled to see him holding his marker so well AND writing his name HIMSELF!
At 11am, it was time for PT with Stephanie. Now that he's getting stronger, it's time to work on independent standing! How exciting! Before the operation, he had been working on it and could sometimes last up to 5 seconds before having to hold on to something. But it was so HARD when he was so high up on his toes and his knees were bent. Now, with flat feet and straight knees, he can make some real progress towards standing on his own!
Here he is standing with Stephanie behind him. She's been continually modifying a beanbag toss game as he's been progressing. In the beginning, he just had to sit on the bench and throw. Then he had to pull to stand using his canes and sit back down, before we would give him a beanbag to throw. Then he had to pull to stand with his canes, stand for a few seconds with his canes, and sit back down before we'd give him a beanbag. And now? He has to pull to stand and then LET GO and stand independently for a few seconds before we'll give him a beanbag.
You can see Stephanie's hands behind him here, and yes, sometimes she is supporting him, but there are times where he has stood on his own for up to 10 seconds! (See the video below for more standing success.)
We've also been working on knee-walking. Before the surgery, Ben could take up to 10 steps on his knees before falling forward onto his hands. Now, Stephanie has to support him, but we expect that this will improve quickly.
And I had to post this picture just because it's so cute!
Here's a video of him working on his standing for Daddy and Daniel:
At the end of each morning session of PT, Ben does his walking practice. At first it was with his walker and then he progressed very quickly to his canes. And this time? He was holding onto a skipping rope. His steps look amazing! His feet are nice and flat and most of the time he takes nice, big steps. And sometimes? His heels even hit the ground first!
Ben's pool sessions have been going great. He LOVES the pool and does everything that Stephanie asks him to do. In the pool, he works on standing with his feet flat and his knees straight. He also works on high kneeling (standing on his knees), pulling up to stand, squats, and even walking! And this week he took his first independent steps in the pool!!
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